Hey Everyone, I was wondering if anyone here has had surgery with Dr. Nakaji in Arizona? I am asking because a close friend of mine is considering going to him for a complex case. She is considering him or Dr. Constintino in New York. Has anyone had surgery for a complicated case involving compressions? If so, can you please share your experience.
3 Likes
There have been some discussions comparing the doctors, it does seem to be down to a personal choice and that sometimes their interpretation of imaging, symptoms & other testing does seem to vary. Both doctors have done successful surgeries. There’s been a couple of discussions I’ve found, I’m sure there have been others though, & hopeful some with experience of the doctors will chip in!
Update - Consultations with Hepworth, Costantino, & Nakaji + Discouraged - General - Living with Eagle
Costantino, osbourne , nakaji, Samji - Welcome / New User Help - Living with Eagle
1 Like
Our member @Chrickychricky has had two IJV decompression surgeries done by Dr. Nakaji. Here’s one discussion where she talks about her experience:
2 Likes
Hi @Ihurt, I had my first surgery, a unilateral IJV decompression surgery with Dr Nakaji about 3 weeks ago. I wanted to wait 6-12 months before writing about my experience, since in general it seems that treatment for this issue is rarely a one-and-done situation and improvements post-op appear non-linearly, but I saw your post and wanted to chip in with my two cents now, hopefully it will be helpful to your friend and maybe others.
The short version is that I am really glad I chose to go to him for treatment. I had and continue to have a really positive experience as his patient, and I strongly recommend him.
The slightly longer version:
I started having symptoms when I was 15; I am now in my 20s. The list of my main symptoms, in rough order of their impact on my life, is: brain fog and feeling like I am almost constantly lightheaded, sleep issues, fatigue (but no post-exertional malaise), visual snow syndrome, head pressure and pounding (but not headaches), balance issues, POTS, tinnitus (both pulsatile and non-pulsatile), some TMJ issues, seeing my pulse within my vision (my vision darkens slightly with my pulse). In terms of comorbidities, I seem to have a minor degree of Superior canal dehiscence in one ear. No clear signs of hEDS or other comorbidities though.
As with many others who go through this, it took many years to reach a diagnosis. In March 2025, however, I managed to push for a CTV, which confirmed significant stenosis of both IJVs (about 80-90% by area on both sides) at the C1 level.
Despite the extensive stenosis and my symptoms, I was luckily never seriously disabled and was able to have a somewhat normal life throughout, including remaining physically active. This was likely due to extensive collaterals that have formed gradually over the years. This was possible because my condition is likely congenital.
The fact that my case was mild/moderate was one of the main reasons I gravitated towards Dr Nakaji. As far as I could gather, he seems to be one of the more conservative specialists dealing with IJV compressions. As you may know, he requires patients to show a significant pressure gradient across the site of IJV compression during a venogram with manometry in order to offer decompression surgery. As far as I understand, the idea here is that if a pressure gradient exists, then solving the compression is almost guaranteed to offer at least some improvement in symptoms. In the absence of a pressure gradient, there is a chance that even with a successful decompression symptoms may not improve. To me, this was a crucial point. Considering that I felt able to continue living (albeit poorly) with my symptoms, I wanted to be sure, before I rolled the dice on the risks of the surgery, that there was clear evidence that the surgery is warranted.
After sending my CTV over, he invited me to Scottsdale for an in-person assessment. I traveled to Scottsdale in September, and had an angiogram and venogram with Dr Mehta, who is Dr Nakaji’s go-to interventional radiologist when it comes to this condition. I chose to have the angio/venogram without sedation, as I was concerned about anecdotal evidence that the twilight sedation used during the venogram might lead (in rare cases) to a false-negative and show no pressure gradient, due to the muscle relaxant effects of the sedatives taking pressure away from collateral veins at the back of the head. The angiogram confirmed abnormal drainage of intracranial blood through veins at the back of the nose and in the occipital region, and minimal drainage through the IJVs. The venogram confirmed a significant pressure gradient (8mmHg) between C1-C4 with my head bent forward at 30°, which reduced to 3mmHg with my head lying back. Together, these constituted sufficient grounds to warrant the surgery.
I’m not sure whether I am a complicated case, but my anatomy is definitely unique. I have several anatomical variants relevant to this surgery that I felt Dr Nakaji identified and navigated well. For example, 1) my IJVs were clearly stenosed on the CTV, but not effaced, meaning they didn’t seem “squashed”, instead having an almost circular cross-section. Dr Nakaji correctly guessed that it was likely that the carotid sheath, through repeated momentary compressions over the years (caused by neighboring material as my head moves around), hardened and tightened, chronically compressing the IJV even in head positions where the C1 and the styloid are not in contact with the carotid sheath/IJV. 2) My IJVs descend more medially than in the average population, meaning that instead of passing by the very edge of the C1 transverse process, they pass in front of the transverse foramen. This is a tricky situation, as it requires taking bony material away from the anterior part of the foramen, which is dangerous as it risks damage to the vertebral artery that passes through the foramen. To mitigate this, Dr Nakaji has recently adopted the use of a tool (I think it’s called Sonopet) that can cut through bone using vibrations instead of a rotating head like that of a standard bone drill. Because of this, the tool can avoid damage to soft tissues (like the arteries), similarly to how a cast saw can cut through gypsum but not cut skin. 3) My left C1 transverse foramen is open, showing a small discontinuity in the bony bridge that usually closes it. He relied on this fact to inform the choice of which side to operate: despite my IJVs being similarly compressed, it was more likely that a better decompression would be achieved on the right, as the lack of the full bony bridge on the left meant that there was less material that could be taken out on that side.
Overall, I cannot speak to other surgeons’ approach, but it really put me at ease that he approached my anatomy critically and adapted his protocol to it.
My surgery went without complications. During the surgery, he discovered another anatomical variant, specifically that I did not actually have a styloid at all. Instead, the thing that appeared as a styloid on the CTV turned out to be just a calcified portion of the stylohyoid muscle, with a malleable consistency. The muscle itself was also strung across the carotid sheath, actively compressing the IJV inside, so he resected the muscle. The carotid sheath underneath turned out indeed to be hardened and tight, maintaining the compression even with the stylohyoid muscle out of the way, so he performed a fasciectomy, where he split the carotid sheath from slightly above C1 down to C4, and the IJV fortunately enlarged nicely at this point. Finally, he resected enough of the C1 to ensure that the IJV is not compressed by it upon various head movements. He informed me post-op that he was able to take relatively little from the C1 transverse process, which I had asked for explicitly before the surgery, if possible, and I was very grateful for.
My post-op recovery went equally well. I was in hospital for one night and left the next morning. I used Tylenol for the first day only, and then I was able to go without any pain meds except for two baby aspirin daily, which I took to minimize the risk of blood clots more than for the pain. By day four, I was pretty much back to my pre-op baseline in terms of overall function, including being able to restart cardio. As far as surgery-induced side effects are concerned, I currently only have a small patch of skin near my earlobe that is numb and a slight increase in my first-bite syndrome on that side, which I had from before the surgery anyway. Dr Nakaji was very upfront that some nerve damage around my ear was almost inevitable during the surgery due to the shape of my jaw (square and relatively long), which meant that it had to be pulled on fairly aggressively to enable access to the C1. However, I had no other symptoms beyond the numbness, which was great (some people get some loss of muscle functionality at the corners of their mouth, in their shoulders or eyes).
In terms of my pre-op symptoms, I am now at 3 weeks pre-op, and I feel some improvements across the board, but not a lot. This was something I was prepared for. First, it’s still early days, and there is still inflammation in the area, which might be compressing the IJV. He mentioned that you can only accurately assess the state of the vein starting at 6-8 weeks post-op, once the swelling goes down. Secondly, he mentioned post-op that there is a small region of the IJV immediately below the skull base that he could not access without risking damaging important nerves, where compression may still exist. If that is the case, he mentioned that endovascular treatment, which he can arrange with Dr Mehta, should be able to address this. Thirdly, it was clear since before the surgery that my left side may need to be tended to as well. Regardless, he seems committed to continuing to work together to achieve the desired clinical outcome. He is currently helping to set up an appointment for a non-contrast MRV at 8 weeks post-op to assess the state of the vein, and we’ll see what else needs to be done at that point. Overall, I feel that he has the experience and works with the right people for me to be able to access a complete treatment for this thing, which is a breath of fresh air after years of struggling to find adequate help.
His office has also been recently very quick to answer questions and inquiries, which might seem like a small thing, but I appreciated it enormously.
Finally, I know very little about Dr Costantino, so I can’t provide any insights there, maybe beyond the fact that both him and Dr Nakaji are, as far as I understand, a part of a network of Drs in the US that work together to improve diagnosis and treatment for Internal jugular vein compressions, and have recurrent meetings to share new insights.
Let me know if you have any questions, and I’ll do my best to answer!
5 Likes
Thank you for that thorough explanation of your situation & decision to have surgery with Dr Nakaji, I’m sure it’ll be really helpful for members considering different doctors.
I’m glad that you’ve had the surgery & it sounds like not too bad a recovery, I hope that you’ll soon see some benefits, it sounded tricky but you were in good hands!
3 Likes
Awesome! I’m flying to Phoenix next week to do the same thing. The plan is venogram with Mehta, and if that is positive for blockage surgery with Nakaji.
My case is likely less clear cut on actual blockage, and I’m extremely worried he won’t do the surgery on me after a long flight + wait.
His office has been really good so far.
4 Likes
Interesting info about the sedation doing a false negative, I might go the same path. Where did you see this?
2 Likes
@jalexy12 - Sedation potentially giving a false negative has been mentioned by a number of our members who heard it from their doctors, however, the vascular surgeon who did my angio/venogram in Denver (Dr. Hepworth referred me), told me it didn’t make a difference one way or the other ie w/ or w/o anesthesia. He said he’d done over 1K angio/venograms. I will say he was an older doctor so likely more old school than Dr. Nakaji & Dr. Mehta.
2 Likes
I remember reading a post on the FB Jugular Venous Outflow Disorders group about Dr Mehta updating his venogram protocol to not use sedation in patients where it’s suspected that soft tissue is likely involved in the IJV compression. This was as a consequence of one patient showing different pressure gradients on two venograms done using different sedatives. I did not end up talking with Dr Mehta about this, I just asked his assistant whether it would be possible to have it without, he relayed it to him and came back to say that it’s fine and we’ll do it without, so I’m not super sure about his current stance on the issue.
I just wanted to add a word of caution about going without sedation. I don’t regret doing it, and if I were to do the whole thing again, I would still choose to go without. My reasoning was that if there is even a small chance of a false negative, which could delay getting treatment, maybe indefinitely, the cost of one hour of discomfort is negligible by comparison.
That being said, it was fairly uncomfortable. Not pain-wise, but in terms of the unnatural sensations I went through. The venogram part is fine, as the contrast dye (which is an irritant) is injected into the veins, and it quickly makes its way away from any sensitive tissue. During the angiogram, however, since the dye is injected high in your carotid artery, a high concentration of it reaches the tissues in your head. The dye cannot cross the blood-brain barrier, so your cognition isn’t affected. However, since extracranial nerves are not protected the same way, they feel the brunt of it. For me, this meant burning sensations inside my mouth and head, my hearing got muffled at some point, I got dizzy, I saw lightning flashing, and my eye muscles stopped working, meaning that my affected eye stopped focusing correctly, all on the side where the contrast is injected (they inject it twice on each side of the head). Although I had been prepared for this by the nurse, and rationally I understood these were normal, transitory sensations (they never lasted more than a 10-20 seconds), my lizard brain really freaked out, and I had to try hard to calm myself.
My advice here is to talk to Dr Mehta about going without sedation. If, however, you also feel strongly about going without, I really recommend trying to keep your eyes closed during the procedure. The vision issues thing was maybe the most unnerving, and I think I could have avoided that had I not been trying to follow the images they were getting (you can see the monitor in real time during the procedure).
3 Likes
Excellent & helpful information, @crumblecookie. Thank you so much for taking the time to share your experience.
2 Likes
Yep thanks a lot, I’m doing the exact same thing next week so this is very helpful.
3 Likes